Family reports of dying patients' distress: the adaptation of a research tool to assess global symptom distress in the last week of life.

Understanding dying patients' symptom distress is an important component of efforts to improve care at the end of life. It can, however, be problematic to conduct research with dying patients. Family members can serve as sources of information about decedents' last days of life. In order to assess family reports of decedents' global symptom distress in the last week of life, we adapted the Memorial Symptom Assessment Scale Global Distress Index (MSAS-GDI), a brief measure of patient global symptom distress, for use in a retrospective study of family reports about end-of-life care. It was administered to a sample of 103 family members to assess the psychometric properties of the instrument in bereaved family members. The Family MSAS-GDI consists of questions about 11 psychological and physical symptoms commonly experienced by dying patients. The majority of family members were able to respond to the scale items. The mean Family MSAS-GDI score was 1.14 (SD = 0.87) with a range of 0 to 3.73. The scale demonstrated good internal consistency (alpha = 0.82). The average item-total correlation was r = 0.49 and the average inter-item correlation was r= 0.30, suggesting items were moderately correlated with the overall total scale and with each other. The Family MSAS-GDI could prove to be a useful tool in assessing and tracking global symptom distress in dying patients.

Family decision-making to withdraw life-sustaining treatments from hospitalized patients.

BACKGROUND: With a national trend toward less aggressive treatment of hospitalized terminally ill patients, families increasingly participate in decisions to withdraw life-sustaining treatment. Although prior research indicates decision making is stressful for families, there have been no psychometric reports of actual stress levels and few discussions of the reasoning used by families compared to clinicians in reaching the decision. OBJECTIVES: The purpose of this study was to assess levels of family stress associated with decisions to withdraw life-sustaining treatments, to assess factors that affected stress, and to compare families and clinicians on their reasoning about the decision. METHODS: Data were collected from hospital decedent charts, family members of decedents, and clinicians who cared for decedents. Data from families were collected in individual interviews, shortly after decedent death and 6 months later, using psychometric measures and semi-structured interview questions. Clinicians were interviewed once shortly following patient death. RESULTS: Family stress associated with the withdraw decision was high immediately following the death of the decedent and, while it decreased over time, remained high a half a year later. Several factors affected stress; most notably, stress was highest in the absence of patient advance directives. In reaching the decision, both families and clinicians prioritized what the patient would want, although families, more strongly than clinicians, endorsed doing everything medically possible to prolong the patient's life. CONCLUSIONS: Findings add compelling evidence for the power of advance directives, whether written or verbal, to reduce the stress associated with family decision-making.

Family reports of barriers to optimal care of the dying.

BACKGROUND: In response to intense national pressure to improve care of the dying, efforts have been made to determine problems or barriers to optimal care. However, prior research is limited by such factors as setting, focus, and sampling. OBJECTIVES: The purpose of this study was to identify barriers to optimal care of a population-based representative sample of decedents across a full range of settings in which death occurred. METHODS: Families were contacted 2 to 5 months after decedents' deaths by using data on their death certificates. Over a 14-month period, telephone interviews were conducted with 475 family informants who had been involved in caring for the patient in the last month of life. Interviews were standardized by use of a 58-item structured questionnaire. RESULTS: Data show a high frequency of advance planning (68%) and a high level of respect by clinicians for patient-family preferences about end-of-life location and treatment decisions. Family satisfaction with care was generally high, even though pain was a problem in one third of the sample of decedents. CONCLUSIONS: Barriers to optimal care of the dying remain, despite a generally positive overall profile; barriers include level of pain and management of pain, as well as some dissatisfaction with physician availability.

Family reports of pain in dying hospitalized patients: a structured telephone survey.

OBJECTIVES: To see how often families in Oregon reported moderate to severe pain in dying patients in late 1998 compared with late 1997. DESIGN: A systematic random sample of death certificates was used to identify family members of decedents who died in a hospital setting between October 1 and December 31, 1998. A structured telephone interview was used to obtain data. PARTICIPANTS: Family members of 103 decedents (who died in hospitals 2 to 4 months before data collection) were identified with the use of death certificates. RESULTS: In late 1998, 56 family members (54%) reported that their loved one experienced moderate to severe pain in the last week of life. CONCLUSIONS: Family reports of moderate to severe pain in dying hospitalized Oregonians remain high. The influence of environmental factors on pain management may have implications for practice and policy nationwide.

Physicians' and nurses' perspectives on increased family reports of pain in dying hospitalized patients.

Many indicators suggest that care of the dying in Oregon has been improving over the past decade. However, results from a recent study suggest that one aspect of care of the dying, pain management, may be worsening. In late 1997, family reports of moderate and severe pain in dying hospitalized patients increased from 33% to 57%. This occurred during a volatile time in the Oregon political climate associated with events surrounding a second vote on physician-assisted suicide. In order to better understand the observed increase better, a statewide sample of physicians and nurses was surveyed to obtain their opinions about factors that may have contributed to the increased family reports of moderate and severe pain in dying hospitalized patients. Seventy-nine percent of respondents endorsed two or more factors as partial explanations. These factors include an increase in family expectations about pain management (endorsed by 96%), decreased physician prescribing (endorsed by 66%), and reduced nurse administration of pain medication (endorsed by 59%). Physicians who thought reduced physician prescribing was a partial factor rated fears of the Board of Medical Examiners and the Drug Enforcement Administration as the most likely explanations for decreased prescribing. More research is needed to better understand family expectations for end-of-life care, fears of investigation, and pain medication practices.

Oregon's low in-hospital death rates: what determines where people die and satisfaction with decisions on place of death?

Where Americans die is much more influenced by what part of the country they live in than by what their preferences are for location of death. Although most Americans report a preference for death at home, a majority still die in acute care hospitals. We describe the experiences of patients who died in Oregon (the state that currently has the lowest in-hospital death rate in the United States--31%) and the views of their families. We examine the factors influencing respect for dying patients' preferred location of death. Data from Oregon studies confirm that decisions to avoid hospital admission are far more common than discharge of the actively dying. Do-not-resuscitate orders were reported for 91% of nursing home residents in one study and living wills were reported for 67% of a random sample of adult Oregon decedents in a second study. In the second study, decisions not to start treatment were far more common than decisions to stop treatment (79% compared with 21%). Only 2.4% of families reported that "too little" treatment was given. Throughout the United States, use and availability of beds in acute care hospitals have been confirmed to be the principal determining factors in location of death. Within that constraint, however, the availability of other resources and services both facilitates the process of arranging for patients to die outside the hospital and improves satisfaction with the quality of terminal care.

A prospective study of the efficacy of the physician order form for life-sustaining treatment.

OBJECTIVES: The Physician Orders for Life-Sustaining Treatment (POLST), a comprehensive, one-page order form, was developed to convey preferences for life-sustaining treatments during transfer from one care site to another. This study examined the extent to which the POLST form ensured that nursing home residents' wishes were honored for Do Not Resuscitate (DNR) and requests for transfer only if comfort measures fail. DESIGN: The study used chart record data to follow prospectively a sample of nursing home residents with the POLST. SETTING: Eight geographically diverse, long-term, adult-care facilities in Oregon in which the POLST was in use. PARTICIPANTS: Nursing home residents (n = 180), who had a POLST recording DNR designation and who indicated a desire for transfer only if comfort measures failed, were followed for 1 year. MEASUREMENTS: For all subjects: treatment and disposition after significant health status changes; orders for narcotics and for provision or limitation of aggressive interventions. For hospitalized subjects: diagnosis, medical interventions, and DNR orders. For those who died: cause and location of death, life-sustaining treatments attempted, and comfort measures provided. RESULTS: No study subject received CPR, ICU care, or ventilator support, and only 2% were hospitalized to extend life. Of the 38 subjects who died during the study year, 63% had an order for narcotics, and only two (5%) died in an acute care hospital. A total of 24 subjects (13%) were hospitalized during the year. Hospitalized subjects' mean length of stay was 4.9 days, and the mean rate of hospitalizations for all subjects was 174 per 1000 resident years. In 85% of all hospitalizations, patients were transferred because the nursing home could not control suffering. In 15% of hospitalizations (n = 4), the transfer was to extend life, overriding POLST orders. CONCLUSIONS: POLST orders regarding CPR in nursing home residents in this study were universally respected. Study subjects received remarkably high levels of comfort care and low rates of transfer for aggressive life-extending treatments.

Oregon emergency physicians' experiences with, attitudes toward, and concerns about physician-assisted suicide.

OBJECTIVE: To determine emergency physicians' (EPs') attitudes toward physician-assisted suicide (PAS), factors associated with those attitudes, current experiences with attempted suicides in terminally ill persons, and concerns about the impact of legalizing PAS on emergency medicine practice. METHODS: A cross-sectional, anonymous mailed survey was taken of EPs in the state of Oregon. RESULTS: Of 356 eligible physicians, 248 (70%) returned the survey. Of the respondents, 69% indicated that PAS should be legal, 65% considered PAS consistent with the physician's role, and 19% believed that it is immoral. The respondents were concerned that patients might feel pressure if they perceived themselves to be either a care burden on others (82%) or a financial stress to others (69%). Only 37% indicated that the Oregon initiative has enough safeguards to protect vulnerable persons. Support for legalization was not associated with gender, age, or practice location. Respondents with no religious affiliation were most supportive of PAS (p < 0.001), and Catholic respondents were least suppportive (p = 0.03). A majority (58%) had treated at least 1 terminally ill patient after an apparent overdose. Most respondents (97%) indicated at least 1 circumstance for which they would sometimes be willing to let a terminally ill patient die without resuscitation after PAS if the Oregon initiative becomes law: if verified with an advance directive from the patient (81%), with documentation in writing from the physician (73%), after speaking to the primary physician (64%), if a competent patient verbally confirmed intent (60%), or if the family verbally confirmed intent (52%). CONCLUSIONS: Although the majority of Oregon EPs favor the concept of legalization of PAS, most have concerns that safeguards in the Oregon initiative are inadequate to protect vulnerable patients. These physicians would consider not resuscitating terminally ill patients who have attempted suicide under the law's provisions, only in the setting of documentation of the patient's intent.

Legalizing assisted suicide--views of physicians in Oregon.

BACKGROUND: Since the Oregon Death with Dignity Act was passed in November 1994, physicians in Oregon have faced the prospect of legalized physician-assisted suicide. We studied the attitudes and current practices of Oregon physicians in relation to assisted suicide. METHODS: From March to June 1995, we conducted a cross-sectional mailed survey of all physicians who might be eligible to prescribe a lethal dose of medication if the Oregon law is upheld. Physicians were asked to complete and return a confidential 56-item questionnaire. RESULTS: Of the 3944 eligible physicians who received the questionnaire, 2761 (70 percent) responded. Sixty percent of the respondents thought physician-assisted suicide should be legal in some cases, and nearly half (46 percent) might be willing to prescribe a lethal dose of medication if it were legal to do so; 31 percent of the respondents would be unwilling to do so on moral grounds. Twenty-one percent of the respondents have previously received requests for assisted suicide, and 7 percent have complied. Half the respondents were not sure what to prescribe for this purpose, and 83 percent cited financial pressure as a possible reason for such requests. The respondents also expressed concern about complications of suicide attempts and doubts about their ability to predict survival at six months accurately. CONCLUSIONS: Oregon physicians have a more favorable attitude toward legalized physician-assisted suicide, are more willing to participate, and are currently participating in greater numbers than other surveyed groups of physicians in the United States. A sizable minority of physicians in Oregon objects to legalization and participation on moral grounds. Regardless of their attitudes, physicians had a number of reservations about the practical applications of the act.

Nurses' reasoning in the assessment of family violence.

This is a report of the reasoning related to family violence by health professionals but specifically by 241 surveyed and 9 interviewed nurses. Using survey and interviewing techniques, this study explored factors that influence clinicians' choice to intervene in family violence and compared the differences in reasoning of health professionals. Findings from both the survey and interviews are discussed. It is recommended that content about family violence be integrated in curricula and that different approaches to clinical reasoning emphasized.

The contributions of nursing science to social support.

Nurse scientists have contributed to the theoretical development of social support through concept refinement, creation of measures, and intervention research. Nevertheless, deficiencies persist pertaining to the conceptualization of the construct and the design of intervention studies. Cultural, technological and political contexts have an effect on social support. The significance of social support, nurses' scholarly contributions, and continuing conceptual and methodological challenges are analysed.

Decisions about life-sustaining treatment. Impact of physicians' behaviors on the family.

BACKGROUND: Despite the growing availability of advance directives, most patients in the intensive care unit lack written directives, and, therefore, consultation with families about treatment decisions remains the rule. In the context of decision making about withdrawing life-sustaining treatments, we investigated which physician and nurse behaviors families find supportive and which behaviors increase the family's burden. METHODS: We conducted intensive 1- to 2-hour-long individual interviews using a semistructured interview protocol with 32 family members of patients without advance directives whose deaths followed a stay in the intensive care unit and withdrawal of treatment. We analyzed more than 700 pages of verbatim interview data using content analysis techniques and achieved more than 90% interrater agreement on data codes. RESULTS: Themes emerged as families identified selected physician and nursing behaviors as helpful: encouraging advanced planning, timely communication, clarification of families' roles, facilitating family consensus, and accommodating family's grief. Behaviors that made families feel excluded or increased their burden included postponing discussions about treatment withdrawal, delaying withdrawal once scheduled, placing the full burden of decision making on one person, withdrawing from the family, and defining death as a failure. CONCLUSIONS: Study findings provide an increased understanding of the unmet needs of families and serve to guide physicians and nurses in reducing actions that increase families' burdens as they participate in treatment withdrawal decisions.